I’m jumping back in where I am, and trying not to get bogged down by trying to fill in the gaps. This post will be part explanation and part celebration.
Why the celebration? Don’t get too excited, this won’t be the average person’s idea of celebration. This is a #spoonie celebration, that’s celebrating every achievement when times are difficult due to chronic illness to remind yourself that you’re a legend … 😀 ! This is particularly important to me because I have so little in the way of support, still waiting on social services – less said about that the better right now, and keeping going on your own in the face of so much can be very very tough. This is like being my own ‘cheerleader’ 🙂 .
I was woken by the phone just before 9am today. I felt dreadful. My night was a bit of blur but I remembered that it had been marked by nightmares and night sweats. I spent a lot of time going to and fro the loo, thanks to a bad bowel flare. I also felt nauseous and clammy, and the fatigue that has particularly plagued me recently was still present. Thankfully it wasn’t so bad as yesterday when I had to go back to bed at lunchtime because I couldn’t stay awake and kept falling over, but this morning five minutes or so of activity warranted rest afterwards.
I’ve just realised that my face is showing signs of that horrible flare up again, the one that happened several times a few weeks ago. At its worst my face ballooned and I could barely open my eyes. Earlier today I thought something didn’t look quite right when I glanced in the mirror but couldn’t pinpoint anything specific. Now it’s looking increasingly red, particularly around my eyes and mouth, as before, and under my chin, and it has begun to itch … *dashes off to take an anti-histamine*.
I do generally feel like a I’m in a ‘flare’ of some sort. I ache, I’m lurching between insomnia and the most crushing fatigue, I have too little energy (hence no treadmill tales of late – I’m desperate to run but at the moment have no capacity to do so) and my digestive disorder (Bile Acid Malabsorption) is seemingly flaring unexpectedly and very badly. There’s also the nausea, hot flushes, clamminess and night sweats, and I’ve been experiencing violent mood swings lately, not at all like me, resulting in sudden and very severe depressions. I lost six days to one last week, things got very desperate and I became actively suicidal at its peak. I’ll cover that a little more in a separate post. I strongly suspect at least some of the symptoms to be due to a hormonal issue, likely a particularly impactful perimenopause, but I don’t know if that’s true of all of them. I would like to know what’s going on and I’d certainly like to feel better. All recent blood tests apparently indicated that all is well …
I’m conscious of not wanting to make this a long post, and of the need to take off my make up and apply some of the dreaded steroid cream since my face has begun to flare again. I have no idea what is behind these flares, but still suspect something systemic. I wasn’t wearing any make up at the time of the original incidences of this, and today I’m wearing minimal make up, nothing new, that I’ve worn a lot recently without incident.
- Therapy session
- Too nauseous to eat breakfast but made a lovely post-therapy brunch
- Answered the phone twice – first a wrong number, a lot of people seem to think that I am a fancy hotel in a neighbouring district (!), second time it was the tradesperson who’d arrived to carry out annual safety checks for my landlord but then couldn’t work out which entry buzzer was the one for my flat, so rang to be allowed in!
- Created a new label for my buzzer on the door entry panel, to replace the previous one which had worn off, and stuck it firmly in place when I went down to take out my rubbish
- Started an online art therapy course – completing the first six lectures
- Did a lot of work in my bullet journal
- Dealt with my pharmacy delivery – ‘Pharmacy Bob’ was as lovely as ever.
- Emptied and refilled the dishwasher
- Put on a load of laundry – phew, looks like I just escaped having to start going commando … !
- Booked a cab to get me from a physiotherapy to a dental appointment on Friday. The physio is squeezing me in, it’s the only space she had, but it leaves me with just 10mins to get to my appointment at the dentist – hence the cab and a need for me to shout, ‘Step on the gas, my man!’ (not really 🙂 )
Still to do
- Report leaking dishwasher
- Hang laundry
- Make this recipe – hopefully it will be a bit of a treat
- Evening Routine